Relationship Between the Clinical-Neurophysiologic Pattern, Disability, and Quality of Life in Adolescents With Spina Bifida

Abstract

A number of studies have focused on quality of life in children with spina bifida, concentrating for the most part on younger children. We assessed health-related quality of life and disability in adolescents with spina bifida and correlated these with the clinical and neurophysiologic picture. Twelve consecutive spina bifida cases were evaluated through a multiperspective protocol by means of (1) clinical and neurophysiologic assessment, (2) a self-administered questionnaire for general health—Short Form-36 (SF-36)—and (3) standardized disability measurements (Functional Independence Measure, Barthel Index, Deambulation Index). Relationships between disability measurement, the adolescents' perspective, and conventional clinical and neurophysiologic assessment were evaluated. The Functional Independence Measure is strongly related to the clinical measurement of muscle strength ( P < .03, r > .6). The Barthel Index and Deambulation Index are related to clinical measurement of muscle strength ( P < .03, r > .6), as well as to electromyographic findings in the proximal muscles of inferior limbs ( P < .05, r > .6). Although the function of lower limb muscles, especially the proximal muscles, is closely related to impairment of physical aspects of quality of life, it is only partially related to the mental aspects ( P < .03, r > .6). The findings at clinical examination, especially proximal deficit of inferior limbs, were usually related to higher disability and lower physical aspects of quality of life. The multiperspective evaluation of adolescents with spina bifida shows a high correlation between conventional neurologic-neurophysiologic measurements and the adolescents' own perspective of their quality of life. Our data demonstrated that the conventional clinical and neurophysiologic measurements are useful not only because they provide a measure of lower limb impairment but also because they appear to be related to physical aspects of the adolescent's quality of life. ( J Child Neurol 2004;19:952—957).